spiderybobcat

Yeah, good doctor make a whole world of difference. I was really lucky with the one I got because he was the best in my area. I had the seem thing. I could have 60 presses of a button that administered it an hour. That button became a very good friend to have. Im so glad you found a doctor that took you seriously. Before I was diagnosed I had doctors that didn't seem to believe me, which made me think it was all in my head. That was until the MRI clearly showed my brains were falling out.

I had this same thing. My surgeon said (afterwards of course) that it is one of the most painful brain surgerys you can have. I had the surgery at 15 and at 19 I'm still having headaches from the neck pain, although physio has helped. On the bright side my brain is exactly where it should be.

No problem. It's nice to talk to someone who's had the same experience. A good physio who's had experience with chiara could be a huge help to you. It certainly has been for me. I'm sure your neurosurgeon can give you some advice though as to what they think could be beneficial to help with the pain. If you don't mind me asking, why did they need to take out the c2? Can the muscles support that properly?

Realized I forgot to answer the second half. My recovery took about a year. I find it hard to maintain looking up or looking down for long periods of time. Simply because they took out my c1 vertebrae. And the muscles don't always compensate. I'm also a bit wary of the things I do because I don't have a patch over the hole like I lot of people seem to have.

Same. They even gave me a lollipop beforehand that I never got to eat. Then like a day after my surgerythe pain team took me off the morphine. Sooo I proceeded to vomit everywhere. Thankfully though my surgeon made them put me back on it. I was on two bags a day for 8 days..so yeah, I ended up being somewhat addicted. All in all not a fun experience. But my surgeon has been amazing and is still being amazing trying to help me figure out what's causing some other problems. So I wish you luck with your recovery and I hope the surgery eventually helps with the headaches. I feel for you.